Well, I'm slightly more depressed now than before I found this thread. Thanks a lot, OP.
It's rather underestimated how much of the human mind is actually in the nervous system going throughout the entire body, including the spinal cord, so I suppose I shouldn't be all that surprised that apparently this "miracle baby" was able to exhibit some facial expressions and minor reactions to that which occurred around him. In this way, I believe he suited the definition of "alive," perhaps even had a soul, if you can believe an amoeba does.
That said, I'd probably have had him euthanized, and his family must have been massively religious or something not to have done so. Never has, "The lights were on upstairs, but there was no one home" been such an accurate statement: I imagine he was just a big old sack of human flesh going through the motions of living but with the intellectual capacity of a mollusk. Literally, go back to the first mollusks to develop a backbone, put it in human form, this kid is what it would look like: yeah, it might smile from time to time, but you're still looking at a mollusk. I kept my dog alive when it was old just so it could enjoy a few more moments of existence, but we routinely feed things to pet store boa constrictors with more capacity to experience life than this. How the heck would anything good come of perpetuating that?
This whole scenario says a lot less about being a child and a lot more about the social psychology behind raising children. If this wasn't done out of a religious obligation, it was probably being done to placate the parents' incredible nurturing instincts or being done because they had a lot of people in their lives who simply would not accept euthanizing the baby. It sure wasn't being done for the baby's sake, not unless they were holding out for someone to perform a brain transplant, which I don't believe we're currently capable of doing in medical science. I can't even begin to fathom how they came to grips with having that creature in the other room for over 1000 days, but I imagine a lot of it came with telling themselves it was a child and not a mollusk... they probably considered it a living memorial of a stillborn child, really, and the care they showed was a demonstration about how they'd treat a kid to everyone: their relations, the media, God. Truth is stranger than fiction.